The Gift Of A Lifetime

December 24, 2001|By Stacey Singer Health Writer

It would cost $100,000 for the operation that could stop her mother's tremors.

No one in the family had that kind of money, and there was no health insurance. Grace Donofrio knew all this as she scanned the Internet, reading about the latest surgical treatment for tremors caused by Parkinson's disease. It was early in 2001, and Donofrio, full of hope, called a family meeting. She told her brother and sister that no matter what it cost, no matter what they had to sell or borrow, they must find a way to give their mother the operation.

Somberly, they all agreed.

In her healthy days, Neponezia Simoes crafted beautiful dresses, an elegant confection of organdy and flowers for Donofrio's wedding, a variation of Chanel or St. Laurent for a regular customer.

As word spread of her magic hands, women would enter Simoes' Deerfield Beach shop clutching pictures of thousand-dollar evening gowns that they could not afford. A few days later, Simoes would deliver a replica, perfectly fitted, priced at a fraction of the original.

By 1995 though, Parkinson's tremors turned Simoes' right sewing hand into a fluttering, uncontrollable bird. Soon, her right foot, the one that pressed the sewing-machine pedal, began to jerk violently, too. By 1998, Simoes could not drive. She could scarcely eat or sleep. She certainly could not sew.

And so the woman with the magic hands lost her livelihood, her health insurance and her smile. At night, wracked by muscle spasms and pain, Simoes humbly asked God to take her life.

Her daughter prayed, too.

"We prayed for healing, for a cure and for a miracle," Donofrio said. "Yes, we asked for a miracle."

Her search led her to Dr. Lloyd Zucker, a Delray Beach neurologist. He was one of the few physicians in Florida trained to perform something called deep-brain stimulation, a procedure that uses a sort of pacemaker for the brain to stop tremors. He, too, had magic hands.

Something new

Zucker is attracted like a magnet to the newest gadgets, the newest software, the newest techniques. He loves the adrenaline rush of the unexpected, something fed by his work as trauma neurologist at Delray Medical Center, where he salvages mangled and broken bodies from accident scenes. He also loves brain surgery and is helping study an emerging technology that turns brain signals into sound waves as distinctive as a thumbprint.

Soon after a brain stimulator developed by Medtronic was approved by the FDA in 1997, Zucker sought training to use it. The typical treatment in tremor cases is medication. If that fails, surgeons sear a Tic-Tac-sized piece of brain tissue in a region that controls motion. But since 1997, studies have found that deep-brain stimulation works even better for many patients.

Medtronic's deep-brain stimulation device, called Activa, requires an electric probe to be inserted into the brain at precisely the right location. From there, a wire snakes beneath the skin down to the clavicle, where a watch-sized pack emits pulses of electricity. With the proper timing and charge, the pulses can help even out a patient's shaking. and allow them more control of their limbs.

When Donofrio brought her mother to meet Zucker, he eyed Simoes' rhythmic jerking. It was severe, and only on the right side of her body. That meant that only the left side of her brain was involved. Simoes was a good candidate for deep-brain stimulation. He thought he could help.

But then came the difficult question.

"How much will it cost?" Donofrio asked him. "We have no insurance, but we will sell our houses, our businesses, we will do anything it takes to pay for this."

Zucker had no idea. He left the room and began to make calls. One patient told him her insurance had paid the hospital $80,000 for her operation. His heart sank. Boca Raton Community Hospital said the entire package could run up to $250,000. He could not ask this Brazilian family of tailors and dry-cleaners to find such cash. He made more phone calls.

A few phone calls

The next one was to Boca Raton Community Hospital's chief financial officer. He told the hospital he wanted them to donate the surgery. He said he would do the same. He called an anesthesiologist and said he needed service for a morning-long procedure -- for free.

"I expected a grumble or two, and a `nice try,'" Zucker said. "But a few hours later, I got a green light. I was told to go ahead. So I called Mrs. Simoes and said `Merry Christmas'"

Donofrio wept in disbelief.

"He is an instrument in God's hands," she said. "He is our miracle."

"He is my angel," Simoes whispered.

And so, a few weeks before Christmas, the family gathered in the surgical intensive care unit at Boca Raton Community Hospital, full of fear and hope. Simoes husband, Assis, stood by his wife's side, protectively stroking her hair. Donofrio searched her mother's eyes, telling her everything would go well, she would be fine. God was with them.